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Scoliosis causing other problems

Aug 20, 2015 8:51 PM

I have scoliosis - it's never goes away - I've had corrective surgery with Herrington rods. But now it seems my back is attacking other parts of my body - such tense muscles from the hips into the cheeks , causing tailbone and sacrum pain sharp pains all the way back up to the shoulder- when my shoulder get bad it seems to spread into my chest - my muscles are so tight creating knots that just reek havoc causing chest pain from getting into the ribs sharp pain every time to breathe in causing shallow breathing chest feels heavy. N I'm a small girl so u can really feel these squishy knots everywhere thru out my back down to tail bone- thick neck causes headaches - it feels sad to just think I can list this stuff and knowing I am young n it's only gunna get worse over time makes it even worse cause how when it's already this bad .. N oh the sharp pains .. In a wide variety of feelings I can't even discribe - at least my dr did tell me something postivw- the sharp pains can't kill me -even tho they feel like they can - they won't kill u - it's everything that comes with it like the hard to breathe n shallow breathing n anything else it effects will get ya ;) at least there's that .... (Anyone relate- I feel like I relate so much to fibromyalgia ppl n I just got scoliosis causing hell to my body .....)

Aug 20, 2015 9:12 PM

Abundleofpunk12, I'm so sorry you are fighting this so young. I can't imagine what you've been through. I have chronic muscle spasms from a 1990's auto accident. I have spine issues in every section but my neck was fused and they can't do anything else in that area. My L4-S1 &SI joints cause sciatic pain into the thighs and buttocks. I developed fibromyalgia about 6-7 years ago. And this year I was dx with Sjogrens and hypothyroidism. All of these can cause tight, tender, painful muscles.

My PCP has given me muscle relaxers, which I only take as needed. I also used Voltaren gel and it works pretty good too. I have a TENS unit also. Do you use anything like these? The TENS unit blocks the pain signals and helps the muscles relax. I've also had nerve blocks which has helped a lot. I try to get a massage when I can because it just relaxed me so deeply, and it helps for 4-8 days.

Hopefully others will have more suggestions. You can always look for support here. I'll keep you in my prayers. 🙏🌼

Aug 21, 2015 10:37 PM

Hello Abundleofpunk12 I am 37 now butvwhen I was in middle school I was checked and DX with scoliosis and it was never taken care of because my parents didn't have the money and I have often wondered if that has caused all of my problems today. You were talking about sharp pains when taking breaths in. I get that a lot and had gotten that a lot before I was dx'ed with scoliosis. So now when the schools here offer to chech my children for scoliosis I have them checked and taking care of it ASAP so they don't have to go through what I did as child and adult living with all this pain.

Aug 22, 2015 1:44 PM

Hi fellow Scoli survivor. I have a Harrington rod too from 1981. Hot soaking epsom salt baths help alot. I am also tall and thin 5'9 120 lbs so I feel and see every knot. Massage helps me greatly. I have had muscle relaxers available since surgery. Just curious how long have you had your rod, what part of your spine is it in, do you have autoimmune issues. One of the best things to help the pain is prevent it by having strong core muscles. I do pilates a few times a week and I hang upside down and that helps so much. I also have RA and a blood disorder (leukemia) studies have shown that Harrington rods 67% leech metal into our bodies causing the inflammation process to go a bit haywire. Keep in touch. I have been keeping a mostly Paleo diet with juicing and it has helped my inflammation.

Aug 22, 2015 2:01 PM

@Moparmom - middle school found it n it didn't bother me then - they sent me to Shriners n my curve was only getting worse in the brace so I had to go for surgery - yay for school testing

Aug 22, 2015 3:21 PM

@LMB I'm gunna say I got it in 2000 or 2001 :April first ;) : I kno it wasn't segmented it and that it was titanium so I got 2 titanium rods fused in there. It starts in my lumbar n not my neck - they had to shave off part of one of my shoulder blades and it ends a few disks above the hips (I don't lol exact numbers)
But the parts where they stop the spine n body still wanna curve that's as far as I realized

Aug 22, 2015 6:21 PM

Oh n i have a TEINS n a ball to try n trigger point my knots the only thing I've found to technically get rid of them is a massage n I'm not talking about the good kind- the kind that hurts n manually follow the knots . Besides that lots of soaking - w Epsom salt n even found a good one with menthol in it - n got some muscle rub stuff with like 10%menthol in that sucker to just change the feeling of a stiff muscle n of course on muscle relaxers n nerve meds n starting to realize if I gain like 10 -20 lbs my body can't handle it Slow learning process n hard to describe the pains such a variety - n sometimes I just have to be weird n explain its like the matrix back there lol ugh I'm sure we all can go on all day lol

Aug 22, 2015 6:24 PM

N I got tennis balls n rolling pins n the darnest things to try n rub urself with ;) lol

Aug 22, 2015 9:41 PM

Titanium is much better than the old stainless crap that I have. Titanium does not leech into the body like stainless does. The hips that were recalled were metal on metal so that is a bit different. All of my T-spine is fused, I have beautiful posture lol.

Aug 23, 2015 6:23 PM

Lol I'm sure none of our postures are great lol u kno how often I feel like I'm straight but I ain't lol So I was at the further end of the Herrington rod thing lol I hear it's obsolete now lol wonder what they up to now lol

Aug 23, 2015 6:24 PM

N what that'll come out like 20 yrs later lol

Aug 23, 2015 9:05 PM

I had scoliosis surgery last year and since then I have been diagnosed with other chronic illnesses. I now suffer from chronic pain which most often is isolated in my shoulder blade area but has since spread all over. I take medication but I just increased my dose as my pain came back. I find it hard to function. My spine is still in a lot of pain

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